When my son Myles was just over 2 years old, I was told that he more than likely would never be able to hold a conversation, attend school like all the other children, understand or comprehend socio-emotional context, or grow up to be a functional member of society. I remember literally sitting six inches away from his face and banging a metal spoon on a pot, sobbing, desperately hoping that he would snap out of it and come back to me, but he simply stared right through me into space.
I remember the pain, unbelievable sadness, and sheer isolation I felt. It was without a doubt the most trying time in my personal life, my parenting career and my marriage. My heart ached; it ached for my dear sweet boy, it ached for our marriage that began to literally crumble before my eyes, and it ached for the future that I had envisioned. I felt cheated, robbed and abandoned. There wasn’t a day that went by that I didn’t wonder, Why? Why me? Why him? Why us?
As the days progressed, I realized my life had stopped. I was stuck hanging on to that moment in time around my kitchen table listening to a group of professionals lay out my future and the future of my son as if it was black and white, set in stone, a done deal. I replayed over and over what I was told, feeling as though I had been given a death sentence. I saw my life flash before me and remember thinking, I did not sign up for this.
While it certainly didn’t happen all at once like a bolt of lightning but rather gradually, I realized that time stood still for no one, and I was being dragged through the dirt desperately trying to hold on. I was fixated on my imminent reality, which was desperate, hopeless and hollow. How could I possibly see anything other than the muck and mire that was in front of my eyes? It was like desperately trying to keep my head above the water without being able to see the bottom, which was actually just beneath my feet. Something had to change. When I decided to stand up, find my ground, walk on my own volition, and forge my own path, is when the game started to change.
Don’t get me wrong: The climb back out of that hole was not pretty. And I wouldn’t be human, or a concerned mommy, if I didn’t wonder all along the way whether or not my kid would ever say my name again, or if he’d ever ride a bus, or have a friend, or feel and understand what love was, but I kept moving forward. I kept practicing, and I kept trying. Some things worked; some things didn’t. I had failure after failure, but it didn’t stop me. I had become a force to be reckoned with, and my belief was in Myles. My belief was in hearing “I love you” again. My belief was that anything is possible with love, grit and determination.
Fast-forward almost exactly three years and my kid, the one they told me would never speak or attend school, is enrolled full-time in an integrated preschool, fully verbal and one damn awesome kid! And this torn off corner of a yellow Post-it note with a hand-drawn flower was given to Myles by a little angel on the bus coming home from school. He came running into the house holding it up like he had found a bathtub full of fruit snacks, “Mommy, Mommy, look what someone drew for me on the bus today!” He was beaming from ear to ear, tears filled my eyes, and I cried. I held him so tight, and I kid you not, I was momentarily transported back to that moment at my kitchen table three years ago and felt my heart skip a beat!
I now know without a doubt in my mind that we have endured and experienced everything that we have so I can know what pain, sorrow, hopelessness, and fear feel like from the inside. I know failure, resentment and shame, and I know rock bottom. I know firsthand what it can do to the human heart and head and how we try to cope, manage, numb and check out just to simply survive one more day. But I also know now that failure is simply part of the journey, and most importantly, I know now what gratitude, patience, empathy and true love feels like.
Autism is not for the faint of heart. It requires a level of compassion, patience and love that can only be felt. While the road is filled with unpredictable plot twists, setbacks and frustrations, it is with a brimming heart that I say autism is exactly what I never knew I needed. Myles is my ultimate teacher in how to live and lead, daring greatly, in life and love. He has taught me how to love myself and others for who we are, to appreciate the little things in life, celebrate the minute successes in daily living, and turn inward to find truth, strength and hope. It’s a wild ride, but I am eternally grateful I get to live it.